Title: Qualitative study of family resilience in patients with refractory epilepsy
Abstract:
Objective: The purpose of this study was to understand and identify the characteristics of family resilience in patients with refractory epilepsy in Chinese cultural context.
Method: A phenomenological study method was used to select 12 eligible subjects aged 22-68 years who were hospitalized with refractory epilepsy and/or their family members in the Department of Neurology of a grade-III hospital in Jilin Province of China from January to September 2023. Face-to-face, semi-structured and in-depth personal interviews were conducted. After the interview, the Colaizzi 7-step method was used to analyze the interview data. The specific analysis steps are to read and sort the data, find out, code and classify the meaningful nodes, extract the theme and list the description, identify similar views, and return to the participants for verification.
Result: In this study, 3 themes and 11 sub-themes were extracted. Theme 1: Patients with refractory epilepsy have a strong sense of family faith; Theme 2: Underutilization of family resources in patients with refractory epilepsy; Theme 3: There are many external support resources, which can basically meet the needs. Among them, theme 1 includes three sub-themes: positive views dominate, positive and negative evaluations of stress exist, and personal beliefs are absent or few, etc. Theme 2 includes 6 sub-themes: slightly rigid family functional model, good family cohesion, good family resilience, good family problem-solving ability, poor family communication ability, and good family economic support. Theme 3 consists of two sub-themes: more support from family and community, enough external medical support, etc.
Conclusion: This study identified characteristics of family resilience in patients with refractory epilepsy in a Chinese cultural context: A strong sense of family faith and underutilization of family resources, but abundant social support resources to meet the needs of patients and families. In response to this situation, psychological support skills for the clients should be added to the specialized training courses for epileptic caregivers, family-centered care should be deepened in the health education for epileptic patients, and multidisciplinary and family-centered resilience interventions should be developed to help epileptic patients and their families make full use of family and social resources to help families better cope with the disease and improve family resilience.
Audience Take Away Notes:
First of all, this study design can be applied to qualitative studies of people with other diseases to find out the key questions in the research field.
Second, in the context of Chinese culture, this study found the family resilience characteristics of refractory epilepsy patients, such as slightly rigid family function mode, strong sense of family faith, defects in family communication ability, insufficient use of family resources, etc. At present, more community support and sufficient external medical support can meet the needs of patients and their families.
Finally, this study further explained the needs of patients for home nursing services, and provided a reference for training the curriculum design of specialist nurses, such as adding psychological support skills for service objects. Recommendations on how to better assist patients and families in family care in the future, such as developing multidisciplinary and family-centered resilience interventions, deepening family-centered care in health education for patients with epilepsy, helping families better cope with the disease and improving family resilience.
